A Generation After Uncle's AIDS Death, Filmmaker Traces the Path of Faith, Family and Forgiveness

Miguel, an aspiring actor, had made history as the first Puerto Rican heart transplant recipient. (Credit: photographer unknown)
Director Cecilia Aldarondo reunites with her uncle Miguel's partner Aquin, 25 years after her uncle's death.
Rachel Seed) Miguel, an aspiring actor, had made history as the first Puerto Rican heart transplant recipient. (Credit: photographer unknown

In 1987, when Cecilia Aldarondo was 6 years old, her uncle Miguel died of AIDS in a New York City hospital. Today, the New York-based filmmaker, critic and curator is rediscovering her uncle's life and her family's past -- and forging a relationship with his live-in partner Aquin, who had been written out of their family's story.

In an increasingly rich field of HIV-related films, Memories of a Penitent Heart will be the first feature-length documentary focusing on the faith-based bias that drives families to unwitting bigotry against LGBT people and those living with HIV.

Cecilia took some time to talk with me in the final stretch of the fundraising campaign to bring the film to life, sharing her motivation for making the film and how it has changed her view of people living with HIV and the history of the epidemic.

You've spoken about how "recent films do a lot to historicize AIDS, and to combat the risk of forgetting, [but] there is a lot they have left out."

What are the missing pieces of the puzzle your film will contribute?

I have a two-part answer to this question. On the one hand, I think that these films -- and I think that the fact that there have been so many in the past few years is no accident -- I think that they are doing a very important job of getting, sort of, the American public present to how devastating the AIDS crisis was at its height. I also think that the sort of major films that have been made in the past few years, for me, run the risk of implying that AIDS is over. That's one thing that I think is important to really stress -- is that it's very far from over for a lot of people. But they tend to be people who don't necessarily have the visibility or resources to be heard and seen. So that's one thing: I think that it's important that we bear in mind that there's a possibility, when we narrate history, that in the very act of narrating history we leave things out, and that those things are themselves very important symptoms of something.

So, for me, part of this comes down to the fact that there are whole communities and sectors of society -- mainly people of color, women -- whose stories aren't necessarily being told. I think that, for example, people of color are disproportionately affected by HIV/AIDS today. And so, for me, part of going back to this history is two-fold. On the one hand, I'm trying to diversify the history of the AIDS crisis in the '80s and '90s; but also to then use it as an occasion to talk about the fact that AIDS is still very much a phenomenon that's with us today.

What would it mean if we had something like a Truth and Reconciliation Commission in this country around the AIDS crisis? What would that look like? If we had gay people telling their stories about the ways that they took care of each other and the ways that they really fought at a time when they were also being abandoned? And what would it mean if their families and friends who are straight heard them?

I don't know. I think there's something about the sort of benefit of hindsight that opens up that space for dialogue that I think -- you know, I don't know that it would ever happen on a sort of public scale, but I think that maybe it should.

I think that we as a country really haven't taken stock of how devastating, how profoundly devastating, this crisis was to our social fabric for everybody. So that's one thing.

But I also think at the same time it's not just a historical phenomenon. It is a very present, live phenomenon. People get infected every day. People are dealing with finding out that they're positive, figuring out how to tell their families. I think stigma is still a huge issue. I think that these questions of the way religion starts to play, in terms of the decisions family members make about whether or not to be supportive, or how to listen: It's all still happening. It's not just that it's something we had to deal with then; it's something we have to deal with now. And that's something that I would like the film to also open up. It's for people to examine their own lives and say -- and this even goes beyond AIDS -- I would like for people to look at themselves and say, "Do I have a gay family member that I don't really accept?" for example.

Aquin reunites with his partner's sister in Orlando. (Credit: video still, Cecilia Aldarondo)
Aquin reunites with his partner's sister in Orlando.
video still, Cecilia Aldarondo

What was your personal timeline of how you came to this issue? What did you know, or how were you involved with HIV before learning about your family's story?

I will say that the AIDS crisis of the '80s and '90s: I'm just old enough for that to have really impacted me. I remember when I was about 10 years old reading for the first time, I think it was, a Newsweek feature. It was one of the first mainstream, long, detailed, pretty gruesome articles about the AIDS crisis. And at this point AIDS was already very much a crisis that was sort of a runaway train. I remember being very impacted by this description of symptoms, and what people were experiencing on a clinical level.

And then later, as I became a more political person who cared about social justice and things like this, the more I learned about the AIDS crisis, the more impressed I was that it was such a seminal period for galvanizing people in ways that we haven't seen for a while since, in a way. I think for me that might be one of the reasons why so many people are wanting to look to this period: because there's a sort of almost weird nostalgia for a time. It seems paradoxical to call this period a time of vitality, but I think, in a certain way, there was a vitality in all of this horror that people were dealing with.

I think people did some extraordinary things to try and make the crisis less unmitigated, and deal with some really very difficult things. The other thing I would say is that I have a fine arts background. A lot of my favorite artists happen to also be impacted by the AIDS crisis.

As a person who is not living with HIV, how do you see your role, your voice and your responsibilities as the person telling this story?

It sounds a little self-important, and I don't want it to be taken that way -- but the best word I can think of is the word witness. And that's because I think that a witness is somebody who isn't necessarily the person that's directly the agent, or the person who's acted upon, but the person who is there simply to see what happens. And that person can either be something like a bystander who just sort of watches what happens and doesn't do anything, or somebody who tries to, without presuming to actually know exactly what somebody went through, to listen and to facilitate.

For me, that's been the best way that I can think about what I'm trying to do. I'm not trying to say, "Oh, I know exactly what it was like for somebody who either was infected or lost someone," in a way that -- you know, I was 6 years old when my uncle died. So I can't say that my uncle's friends, or lover, that their pain is -- that my pain is equal to their pain, because it's just not. At the same time, I do think that if people who are not part of the LGBT community directly are not thinking about these things, then it sort of re-ghettoizes that community. And I think that it's always important to think about -- I think that there's a risk of insularity in only telling these stories from sort of within the community.

And when you connected with your uncle's partner after 25 years of estrangement from your family, what was it like to forge a relationship with him?

Miguel and Aguin in the hospital as Miguel recovered from a heart transplant in 1984. (Credit: photographer unknown)
Miguel and Aguin in the hospital as Miguel recovered from a heart transplant in 1984.
photographer unknown

It was crazy. I don't know. It's a strange thing to spend several years actively searching for someone, someone who the only thing I knew [of] was his first name, and then to have that person turn up and contact me on Christmas Eve and say, "I'm the person you're looking for." It's a very strange thing. And it's both extremely sort of satisfying -- like, finally! -- and in a weird way it confirmed everything, every suspicion I had of the conflict that happened, and the fact that the suspicion I had that my uncle's relationship was a very profound -- it wasn't just a casual thing. It was very much a full partnership. And all these questions that I'd had; it was sort of satisfying to know that, in a way, I was right.

But, at the same time, it's sort of like, I don't know, going out and looking for your birth mother if you're adopted. I could never have known what his personality would be like and what his foibles were, or what he wanted out of the fact that I'm making this documentary, or even a kind of, what now? It's not like he can be my biological uncle -- not that we aren't cultivating a relationship. But it's, how do I say this? I will say that the most kind of significant thing for me, at least in the very beginning of finding him, was having a sense that I wasn't going to ruin his life by tracking him down, and that it was something where he had all of this desire for someone in my family to hear him. And to think that I was able to actually do him some good, in that regard, was good. Comforting.

Your film is about many things, including faith and family and forgiveness. As you've worked on it, and worked on this relationship, and learned your own family's history, has it changed your view on these kinds of concepts? And how has it done that?

Yes. I would say it has changed my concept of all three of these. And now I'll try and be succinct.

A young Miguel, who 'never stopped being a practicing Christian.' (Credit: still from 8 mm home movie, photographer unknown)
A young Miguel, who "never stopped being a practicing Christian."
still from 8 mm home movie, photographer unknown

As far as faith goes, when I started the film I think I was probably a lot more angry at the Catholic Church than I am now. I have a more, maybe, complex attitude toward faith. I think I was a little bit like, you know, very much a recovering Catholic, who didn't think of herself as a believer. And in many ways that hasn't changed that much. But I will say that my uncle was a practicing Christian, and he never stopped being a practicing Christian. I think that part of the untold story of the AIDS crisis is that there were a lot of people who did find solace in religion. I think that for secular people, that's kind of scary, and hard to imagine -- or respect -- sometimes.

So it's been important for me to kind of think about: Well, was my uncle a coward? Was he a dupe? Was he a victim of the church?

And I think in certain ways he was not that. He knew what he wanted. And I think it's important, both to kind of combat this pure victim narrative of people with HIV/AIDS to say he knew what he needed in his life. And for him, part of it was continuing to call himself a Christian up until the day he died. And that's been a real complicated thing for me to try and wrap my head around -- and why do people go do religion.

Similarly, Aquin claims that the Catholic Church saved his life after my uncle died, that if it weren't for Catholicism he would have killed himself. That does put a spanner in the works of what I had imagined happened, given my grandmother's pressure of my uncle.

That's the same thing I would say for family. The major way that I think it's challenged my idea of family. And this is something I already sort of had in my mind, but it makes plain: Biological family isn't the only family we have. I think that there are a lot of people in the LGBT community who have forged very meaningful family ties, in the sense of being there for each other, being caretakers, being financially supportive, providing housing and a sense of community and belonging -- all of these things that families are supposed to do.

Gay people have always done that for each other and, sometimes, in the face of rejection from their own families. And it's interesting how, in the age of marriage equality, I'm sort of worried that some of that might be getting lost, that there's a sort of risk of a kind of assimilation into the straight family structure. I think that these sort of alternative ways of thinking of family are important. So that's another thing that I want to sort of respect in making the film, and sort of fight for.

And then the third thing -- what was the third part?


Oh, forgiveness. Yeah. So that one's fairly straightforward. I guess I've had to think about particularly how to forgive my grandmother because I've sort of shared a lot of Aquin's anger at her. And I also think there are a lot of people that have been commenting on Facebook and things. I got a comment just the other day where somebody said, "HOW COULD THAT WOMAN PUT A CRUCIFIX ON A DYING MAN?" He was just -- in all caps -- horrifically offended. And I share that kind of sense of being offended. And, you know, to find out just how fanatical, in many ways, my grandmother was has been hard.

But at the same time I don't necessarily think we get anywhere by being right. And I think that for me is part of what I've had to do-- and I've had very frank conversations with Aquin, in which I've had to say, "My grandmother was a complicated woman; and she wasn't all bad." And I've had to actually, weirdly, stick up for her with him. That can be very confusing.

Miguel and his mother, after he received a heart transplant in 1984.
Miguel and his mother, after he received a heart transplant in 1984.

Forgiveness seems like a very sort of weak and touchy-feely thing; but it's not easy. And I think that when people just stick with their positions of kind of being on the right side of history, it doesn't necessarily help us move forward. And so I think there is actually a lot of necessity for forgiveness.

What is the most important or interesting thing specifically about HIV itself, if there is such a thing -- you know, just HIV focused -- and the AIDS crisis that you've learned about in the course of making this film?

I guess, off the top of my head, it's like this sort or Rorschach test thing. I think one thing I would say that comes to my mind right now is, people who are infected are not victims. And I think that there's a danger in only perceiving people as afflicted by this disease. I think that my uncle was a person of extraordinary grace, who went through a lot. And he died.

He showed me that one can go through something and be discriminated against, and not be a victim.

That's great. And then, lastly: What's the status currently of your film? How will people be able to see it when it's completed?

We are currently editing the film. We've made actually a lot of progress. And we have about 60 hours of footage. We are in the middle of a major push to fund raise, too, so that we can complete the film.

We basically have a story. We just have to tell it. And the campaign right now has about 15 days left -- and in that 15 days, we have to raise just over $19,000. So we have quite a bit to go. And so this campaign basically is a really crucial moment for us so that we can then actually get a film so that people can see it.

The film will include recently discovered archival footage. (Credit: Cecilia Aldarondo)
The film will include recently discovered archival footage.
Cecilia Aldarondo

I think that right now it's all about getting the word out and asking people to share the word with others. Because, in many ways, this is a very kind of grassroots effort that we have going. And so it's really about just people talking about the filming and sharing their experiences, and really just helping us to get it completed.

And then, as far as where people will be able to see it, I won't be able to tell you that until the movie is done. Because it really depends on the kinds of successes that we have. So it's really about -- our aim is as high as possible, and as wide as possible. We really want this to be something that gets seen widely, and through a combination of theatrical release and DVD; and also outreach screenings that we're hoping to do.

But we're not even really at that phase where we can say where it's going to be seen yet. But if we get the support that we need now, we will be able to do that in the next year.

Best of luck for that, and thanks so much for talking. We'd love to keep in touch about the film along the way.

This transcript has been edited for clarity.

Learn more about Memories of a Penitent Heart and the fundraising campaign to complete production.

Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.